Hi, I was wondering if those of you with RRMS have any persistent symptoms in between attacks? If so what kind?
I've recently been told I have demyelination on my brain MRI scan so currently being investigated for MS, just don't know what type as it's early days.
I was sent for a scan based off my persistent dizziness (very mild) and fluctuating altered sensations at the back of my right hand that wax and wains daily. Dizziness has been on going for 3 month and hand symptoms 2 month- it doesn't appear to get worse not better.
Thanks in advance.
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Lee2k182
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10 years ago I began accumulating chronic symptoms. Vision, legs, cognition, fatigue, arms/hands. Usually stress or lack of sleep would worsen my baseline.
Hi there! I had symptoms linger for a while; dizziness/lightheadedness, right sided weakness, fatigue (couldn’t function without a daily, midday nap), altered cognition and tingling all over. Everything did eventually go away, but it took several months. I’m now 5 years in and I’d say I’m back to “normal.”
So lucky to have a normal again! If my new normal, as they say,is this then I don’t want it and thy can have it back! Even after years I still have vertigo! The old dr just shrugged it off and didn’t do anything about it! He’s not my dr anymore! We’ll see how this new one does!
Mine started with heaviness and weakness in my legs when I was unusually active or the weather was hot. It took decades before those became a daily issue. "Bugs under my skin" and visible muscle spasms in my left forearm and thigh are recurrent issues that pop up every now and then.
Those bugs under the skin are so annoying, aren’t they? I try to scratch and, of course, it doesn’t help. There is nothing to scratch. Just a skin tingling that comes and goes for me. And then there’s the water pouring down my leg that is not there, but feels so real!
Hello! RRMS here, diagnosed 7 years ago. I have chronic tingling/numbness in my lower legs. Some days I can feel more sensations & other days they are very tingly or desensitized. Other sensory symptoms (tingling in hands, etc) come and go, depending on what I'm doing that day & if I'm stressed / sleep deprived.
One of the things you'll learn on this site is that while MS has common/typical symptoms, everyone's experience with it is different.
Thanks for your input, your description of desensitization is just like what I'm feeling at the back of my hand, like I can feel pain, temperature and touch but it just doesn't feel right- I can use it perfectly fine but I do find if I do a 5k run it becomes weak towards the end but quickly resolves within minutes. I do get the odd tingle here and there also that pass by very briefly.
My most concerning symptoms, the one that got me an MRI is my dizziness! It's driving me mad. It's not quite true vertigo with spinning and it's not quite light headedness like you'd get of you stood too quick, but more of an drunken sensation, usually when I'm up and about and less so sitting.
I guess I'm just concerned if I have symptoms more fitting for PPMS rather than RRMS (I know I'd need my neuro to confirm that) but I'm just a little agitated waiting and wondering. Up to now, I'm lucky that I have no mobility issues, can run a 10k in around 50 mins no problem (for now).
Yes, I know that feeling; dizziness, but not spinning and lightheadedness, but not…I had the hardest time describing it. Definitely one of the worst symptoms!
That’s so great you’re a runner! All I can say is keep it up for as long as you can, it will really help with MS. I was an avid exerciser (runner, triathlete and crossfitter) for many years. I think that’s why I’ve been doing well in regards to MS.
Did you resolve the dizziness? If so, any tips? It only seems to appear 1st part of the day and decreases towards the latter part of the day. When I get my official diagnosis I'm hoping the DMTs will resolve it. Wishful thinking.
Honestly, I can’t remember exactly, but I had a really bad first episode (diagnosed then) and I slowly improved in about a month. Yes, it completely went away, although sometimes still have small moments. I remember it being bad when I was laying down or moving around too fast.
Tips: rest up as much as you can and don’t do too much. When in a relapse, our bodies (nerves) are essentially overrun with inflammation. Rest and healthy eating will really help.
me too, what exercises do you do now? I was into kickboxing, pilates, and aerobics, now all I can keep up with is yoga. It’s sadly boring to me. Burt at least I’m moving. I guess :/
That’s so hard! I do run still sometimes, but it just doesn’t feel great. I don’t think MS related, just too many years running, lol. Now, I do yoga, lift weights, walk and hike. And try to keep up with my 6 year old 😂
When I was first diagnosed, I went to a MS specialist at a prominent university hospital here in the US. The neurologist told me I had a "touch of MS". He did not flag an official type in my chart, so my medical records showed I was never officially diagnosed.... talk about an insurance nightmare!
What's a "touch of MS"? Your guess is as good as mine. I always assumed it was RRMS, as that is generally the mildest version. It wasn't until a couple years later that I got a neuro to actually put a type on my chart.
I do occasionally get a quick "spin" as well. It's not dizziness, but it is momentarily disorienting. I usually noticed it if I try to turn my head to look at something. If I rotate my torso, it's less noticeable (maybe because the motion is slower). I also can't close both eyes while standing or look up at the stars in a dark night sky. Those will make me sway/stumble.
I've only had a couple mild relapses since being diagnosed. My brain MRIs have been mostly stable on DMT. I haven't had a full spinal scan in a few years, but had multiple lesions on my C & T-spine MRIs when diagnosed.
Symptoms getting worse towards the end of your run sounds a little like Uhthoff's syndrome.
"a touch of MS", made me giggle lol. Thank you for your input, I was thinking it could be Uhthoff's phenomenon originally but apparently that's only when the core body temperature increases and I've been in many situations where I've become hot (over worked) and NOT had issues so I don't know how that works. I'm beginning to think that one could be a separate issue to MS but who knows, I'll find out more in about a week I guess. I've only had an MRI head and C spine, with 6 small lesions found on my brain and none in C spine so far.
What's strange, is I've read many articles about lesion location, with dizziness, apparently that happens if the lesions are on the cerebellum, top of spinal cord or C-spine. I have none located in these areas.
Hopefully the neurologist can help you figure it out!
One time, I was struggling with my hands suddenly letting go/losing grip & dropping things. I mentioned it to my MS Specialist (because that just has to be MS, right?)
Her response: Do you rest on your elbows on your desk?
Turns out, I was leaning on my elbows throughout the day & putting pressure on the nerve there. I made a conscious effort not to do that, at my hands stopped dropping things.
I hope it never takes it away from you! It really does affect everyone differently!
Originally it was PPMS. Then they changed it to RRMS. So idk. But I do know it’s MS. lol. I have had it for approx 35 years. I went to dr like 7 years ago - I waited till stuff got real bad. They put me on medicine called Kesimpta 2 years ago. It’s supposed to last a whole month. It never did. It lasted 3 weeks. The 4th was the crap gap. Then it only helped for 2 weeks. Now I am supposed to be going on Mavenclad. This is the 7th week with no medicine. It’s not their life that’s f’ed up, they’re in no rush! So I continue to scream in pain! Not silently! Funny: when the windows were open and I screamed then all the dogs around here would howl and bark 😂
How strange to go from PPMS to RRMS, from what I've read about misdiagnosing ita generally the other way round. How come it's taking so long to put you on your new medication? I hope you get sorted quick!
I so agree! From what I’ve read too! The hold up is the darn insurance company! I had to appeal them. They made me mad. I told them to do what the dr says! He’s the dr they are just pencil pushers! We’ll see what happens! Thankyou!
Ah, I'm guessing you're American? I'm from the UK so we don't really have those issues here, we generally have long referral waiting times though. Fingers crossed you get things resolved quickly 🤞🏻
I can understand that you are worried about PPMS and about the possibility of being unable to run. It is a scary time waiting for a diagnosis. I was told to "not worry about it" and was sent home. I worried about it!! I ended up worse and was diagnosed. That first few months were the worst of all my time with MS. I started back exercising as it was a positive focus amidst all the negative thoughts. 40 years later, I am now told it is why I have done so well. As hard as it is to do, I suggest trying to focus on what you can do right now and enjoy it! And keep it up! Good luck. 🤗
I know it's hard, but try to resist the urge to diagnose yourself. There are supposedly conditions that have symptoms much like MS, and as someone else pointed out, it's different for everyone. I very much hope that you get some answers soon, and that you don't have MS. I wish you the best!
Thank you for your kind words. Yes, I only have 2 weeks to wait until my neuro consultation so I'll know more then. The problem is, I've seen my report and the lesions I have are hugely specific to MS, I think I read an article that shown that the lesions in the corpus collosum (where I have 2) are 97% specific for MS- here's hoping for that 3% ey 😅. I've kind of accepted that I have it, I'm just learning more about it and the types.
Have you looked up the 2024 McDonald criteria? That may help determine if the MRI is enough for a diagnosis. There can be a lot of factors.
Aaron Boster is an MS doctor with excellent videos on YouTube. I learned more from his videos in six months than I did in 22 years of having MS.
IF you do have MS, it's the best time to be diagnosed. There were no medications (DMT in US, DMD in UK, disease modifying therapy or drug) until 1993, and the early ones were a blessing, but not terribly effective. Today there are a lot of high efficacy meds available, and more of them are coming.
Yea I'm familiar with the McDonald's criteria and I hit the criteria so far for that except for the 'Dissemination in time' criteria but I need, obviously, time to hit that one.
Yes, I've been watching his videos over the past month, he's very informative and also Brandon Beaber. It's because of these videos that I'm familiar with the McDonald's criteria and the lesion locations.
Yes I'm hoping I can get on treatment as quick as possible but I'd assume it will be many months yet as they will need to monitor any activity first.
Revisions to the McDonald criteria were introduced just a few weeks ago at the ECTRIMS Conference. I don't know if they're officially adopted yet, but it seems like the revisions will offer a path to quicker diagnosis. Maybe you'll get lucky and get an answer sooner rather than later.
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Worried I have MS.
Possible MS Symptoms No DX yet.
Symptoms?
Not had ms confirmed yet 
New lesions on C-Spine
